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For the record I find the whole 'HIV Lite" phrase extremely condescending. I've yet to meet anyone who views their life with HIV lightly. And I'm not gonna feign a miserable existence and dramatize my well-being so I can scare people into safer sex and/or provide company for misery.

Trying to control action through fear is just way too Republican for me. I'll let the conservative use it.

Later,Mikey

Very well put indeed. It is not my fault if I was in junior high when the worst was to be expected after being diagnosed with HIV.

What can I say I got lucky in that a one pill regimen was available to me shortly after my diagnosis. Keep in mind this one pill still has three very toxic antivirals packed in it. Does this mean it made it any easier? Most of my friends and family all backed away. Some thought the worst, like me, while others just did not want to be bothered anymore. The stigma may not be as strong as it once was, but it is still there. We have yet to wear the HIV badge of honor in public and it is an honor I doubt will ever exist.

I was told that people today will never receive an AIDS diagnosis, but yet I have one and it's not something to be proud of. There is a man on the forums here who just recently started Atripla (HIV lite), he did so after leaving the hospital with PCP. He knew he was positive before all this. Does David fall into the HIV lite category also because he is on Atripla? I think not, but then again I have no grounds to speak because I was diagnosed in 2005.

Two weeks before I was diagnosed I watched Miami Dade police cordon off my sister in laws house and the people from the morgue place her body in a heavy plastic bag... how demeaning is that? They did very little to prepare her body for viewing. She could not handle the medicine, her liver would not tolerate it. Nothing "lite" about that.

Right now I am waiting for 2 consecutive lab results showing a continuing increase in my liver enzymes and if this happens "HIV lite" will not be an option for me any longer, but I keep a positive frame of mind still. I've got too. I mean what choice do I have?

In regards to Lis's statement in the thread I think/hope she is referring to those out there who are negative and don't have a clue about what we go through, but this is not where the "HIV Lite" mindset originated. No I have read the blogs and the threads from those that lended the term here to the forums...

It's rather hypocritical to speak of being pariahs, but yet do so within our own HIV community. I think it's just bitterness, but hope I am wrong. I think it's jealousy and god damn I hope I am wrong...

I hate the term "HIV Lite"... Like Mikey, I find it condescending and that's putting it lightly...

Hey Tom. Well everyone knows there's no such thing as HIV Lite. HIV is HIV. It's not beer. Anyway I think the term was coined here because of excessive "positive thinking"

While it's important to think positively, too much of it is like noise pollution where it makes it hard to focus on the real life concrete steps that we have to take to cope. One of the big issues was depression (and anxiety too if my memory is intact) and how true blue clinial depression can NOT be cured with "positive thinking" which a certain someone was insinuating over and over like spam because lo and behold he had an agenda. So that's why the term was coined last year out of anger, speaking up for the truth and really keeping it real

Hey Tom. Well everyone knows there's no such thing as HIV Lite. HIV is HIV. It's not beer. Anyway I think the term was coined here because of excessive "positive thinking"

While it's important to think positively, too much of it is like noise pollution where it makes it hard to focus on the real life concrete steps that we have to take to cope. One of the big issues was depression (and anxiety too if my memory is intact) and how true blue clinial depression can NOT be cured with "positive thinking" which a certain someone was saying over and over like spam because lo and behold he had an agenda. So that's why the term was coined last year out of anger, speaking up for the truth and really keeping it real

Heya allo- I will have to respectfully disagree with you. The term was coined long before said member's "pollution posts" began. It was coined as a bitch slap. Notice the members that use it are the people who have a flare for the drama and somehow feel that they've struggled with it more than others. While I don't discount their struggles any, I don't think they realize that while the meds situation may be a bit easier, the new gen of hivvies have our own set of issues as well. I once got into an argument with my favorite person on the forum because I believe that he coined the term here on the forums. He said to me that I would probably never get and AIDS diagnosis in my life to which I responded that I already had. To which he just said that I was "different" than all the rest. Yes, it is my opinion that the comment is meant to discount others struggles and one up the other players. And it does piss me off to no end when I see users popping it out right and left.

Tim Horn and I were just speaking earlier this morning. He spent the last hours yesterday at the hospital with a friend with AIDS who passed away.

There is no such thing as HIV-lite nor is HIV a manageable disease, as you all know all too well. Only those who are ignorant, unknowing or uncaring could suggest otherwise.

Nothing I am saying here is new. I just get so angry when I hear anyone, including especially someone's doctor, spouting that nonsense.

And which is why among other things, the lack of real infection prevention in the schools just f*****g enrages me.

It's stories like these that make me wonder if we all have the privledge of living longer lives. I totally understand that many of those who have been living with HIV/AIDS for many years have been through alot of physical and emotional distress but why isn't HAART saving all lives? I knew some guy who is about the same age I was who was positive. He and I never spoke about it, because he was very private about his status. I found out he was positive because he left his medicine on his desk and looked it up on the internet and saw it was Combivir. 2 years later he passed away. I was sadden and shocked because he looked healthy and strong. I told this to my doctor and he said that the guy with AIDS probably died because he was not taking his medicine or got infected with another strain. hmmmm.. Perhaps what the doctor said is true, but I guess I will never find out.

HIV Lite can become HIV Heavy in the blink of an eye...from manageable to unmanageable before you can say Altripa, depending on your states budget. Each new infection is the HIV straw that might break a budgets back. I'm on the list, my meds are covered for the next year...after that it's a crap shoot.

I overheard my caseworker trying to explain to a mother and her newly infected son that all Ryan White money for this fiscal year has been allocated. The best she could do was add the boy's name to the ever growing list. The mother was shocked and incredulous...I gave the mother some names and numbers. HIV didn't appear so lite to them.

Heya allo- I will have to respectfully disagree with you. The term was coined long before said member's "pollution posts" began. It was coined as a bitch slap. Notice the members that use it are the people who have a flare for the drama and somehow feel that they've struggled with it more than others. While I don't discount their struggles any, I don't think they realize that while the meds situation may be a bit easier, the new gen of hivvies have our own set of issues as well.

Thanks. you know more board history than me. A good thing to do is focus on friends who were diagnosed around the same time as you. And if you're around the same age and on similar meds, hey even better. Remain receptive, be selective

Hear hear to Bear

To Tim Horn: If you're reading, I'm saddened to hear of your friend Whatever suffering he had is now over

I want to also clarify what I said about Lisbeth's statement in another thread... During our conversations she has always spoke to me with the utmost concern on my well being when I was at my worst. She was the first person I called after receiving my labs and that includes my girl, she never once deemed me HIV lite and was ecstatic over my results, sorry just needed to get that out. I want others to know that she is not the originator of this term and I also do not think she meant it in the context it was originally used. She posted it in the disclosure/protection thread. I think it may hold some truth to the ignorant neggies out there who don't take HIV infection seriously.

The term itself and how it originated just strikes a chord in me and I think it does many others as well.

HIV Lite can become HIV Heavy in the blink of an eye...from manageable to unmanageable before you can say Altripa, depending on your states budget. Each new infection is the HIV straw that might break a budgets back. I'm on the list, my meds are covered for the next year...after that it's a crap shoot.

I overheard my caseworker trying to explain to a mother and her newly infected son that all Ryan White money for this fiscal year has been allocated. The best she could do was add the boy's name to the ever growing list. The mother was shocked and incredulous...I gave the mother some names and numbers. HIV didn't appear so lite to them.

Hal... It's definitely a reality and one that scares the shit out of me.

Tim Horn and I were just speaking earlier this morning. He spent the last hours yesterday at the hospital with a friend with AIDS who passed away.

There is no such thing as HIV-lite nor is HIV a manageable disease, as you all know all too well. Only those who are ignorant, unknowing or uncaring could suggest otherwise.

Nothing I am saying here is new. I just get so angry when I hear anyone, including especially someone's doctor, spouting that nonsense.

And which is why among other things, the lack of real infection prevention in the schools just f*****g enrages me.

Sorry Tim for the passing of your friend.

Andy, so true and poignant... I heard it said just the other day that the blowjob is teenagers new goodnight kiss... one need not wonder what's done before and with little education we don't have to guess. The thought is scary to say the least.

First off, I'd like to thank everyone for their supportive words and encouragement. With the passing of my friend Joe -- and I am, in a sense, relieved that he has passed on, in light of all the suffering and pain he's experienced in recent months -- I'm really having a difficult time "making sense" of it all.

It has been a long time since I've been at the bedside of a young friend in the intensive care unit, literally wasting and drowning in his own fluids before my eyes. It has also been a long time since I've gathered with others at the hospice, our friend in a morphine-induced coma, waiting for him to take his last breath.

It has also been a long time since I've fumbled over myself trying to take a textbook knowledge of HIV infection to "explain" the death of a friend in light of my own survival. Like me, Joe had been infected for several years... and like me, he never saw his CD4+ cell count drop to a level that typically paved the way for trouble.... both of us "HIV lite" in truest sense of the word -- infected but by no means "suffering."

That all changed with our non-Hodgkin's lymphoma diagnoses, mine eight years ago and his two years ago. Both were "HIV related," as the pathologies were specific to those seen in people with AIDS (B cell lymphoma vs. T cell lymphomas typically seen in the general population). After six cycles of chemotherapy, I survived... and so did Joe... until his relapsed four months ago. What HIV never did to his immune system, chemotherapy did... paving the way for a usually benign bacterial infection to quickly overcome his body in the form of septic shock... followed by massive organ damage... followed by his untimely death.

Yes, it was septic shock secondary to lymphoma that killed him. But there's absolutely no doubting that his HIV infection was the root cause of these body snatching evils. This is, in effect, the way many people with HIV die today. For all of the advances we have made in recent years -- and, yes, they are astounding breakthroughs -- we are still left with a virus that is quite unpredictable in its ability to inflict suffering and take lives.

It all just makes the whole fucking "HIV lite" thing seem so damn trivial and ridiculous. There are simply those of us who are surviving and those of us who, well, are not. Yeah, there are those who suffer on a day-to-day level more -- or should I simply say "differently" -- than others... but while we're all living with a virus that can rob ANY of us -- medical advances be damned -- of life, well, I'll leave the "HIV lite" battle to those who really think something even remotely beneficial will come out it it.

I always assumed it was a term to separate the long termers from the HIV n00bs, but maybe I'm wrong. I wasn't around when it was coined, and OBVIOUSLY there is a lot of baggage here in the train station.

I will say there are often moments when I want to post: "Have HIV for over 10 years and come back to the board with an opinion" but I always keep myself from posting that because it's condescending. I'm sure however I'm not the only one who has that thought. In the same light there's always going to be someone infected as long as me that has had even worse problems so they'd probably bitch slap me down with some gibberish like that, so I guess that's why I try not to make that comment.

And Tim -- so sorry for you lose. And I will totally echo those sentiments about cancer + HIV. It's my biggest fear now as I enter my 14th year with the best labs I've ever had. A guy in a support group of mine just passed away in November from throat cancer, which of course due to his being a long-term HIV survivor his body could just not handle over a long period of chemo treatment. As the long-termer population lives longer and becomes older I feel this will be come more and more common. I can think of one other person who fits this mold that passed away in the last 2 years that I know.

I will pray for him today and I commend you for your bravery. It's no longer just about AIDS but the destruction HIV does. I have nothing else intelligent to say because I have not been through what you and he have been but I share your pain and want you to know that you are in my thoughts and prayers.

What HIV never did to his immune system, chemotherapy did... paving the way for a usually benign bacterial infection to quickly overcome his body in the form of septic shock... followed by massive organ damage... followed by his untimely death.

This is so true. My recovery from PCP, I've come to realize, was somewhat routine. Bactrim and a lot of intensive care. When my Dr realized I had a bed sore on my butt, that's when she became concerned. With a compromised immune system, that somewhat common "benign" bacterial infection could quickly overtake my entire system. She let me and my brothers know just how fatal that little "sore" could be. The intensive care I had been receiving was stepped up a notch or two.

What might have been perceived as a "manageable" disease suddenly took a turn for the worse. All because of HIV.

I take the responsibility for coining the phrase "HIV Lite" and if you read this post from November, you might just understand a bit better just why I coined this phrase. I stand behind the explanation, and unfortunately, the meaning of the phrase has been both changed and in this thread exemplified by the untimely death of one of our HIV family.

Tim Horn, I am very sad that your friend has passed, and at the same time, understand your peace now that he is no longer living a very miserable life of pain and suffering. Please know that this particular example is just one that keeps me firm in advocating for action in this country, when we are talking about HIV and what it has done to our society.

"HIV Lite" is the reflection of an attitude of complacency that I just cannot tolerate, and will not be a part of.

I take full responsibility for this phrase and will not apologise for staying alert to the needs of the HIV community all over this country.

" "HIV Lite" is the reflection of an attitude of complacency that I just cannot tolerate, and will not be a part of.".............. quote

I totally agree with Tim that all of us who are infected with HIV need to be vigilant about complacency or ignorance or bigotry or hipocracy as it impacts the HIV community. We all should know that complacency translates into (fewer) dollars and then into reduced services for HIV positive people.Thank you Tim.

What I can add, which is not a position on this issue, is an attempt at perspective. There was a time, in the mid 1980's when we didn't know what was going on, but our friends, our co-workers, people we knew via their books only, neighbors and lot's and lot's of strangers were dying, suddenly. Horrific deaths in some cases. And, to give this perspective, this was nothing that could be done because we didn't know, then, what they had. We didn't know what was causing it. So anything brought incredible fear. Was this the flu or IT?

I also worked for half a year (until NYC pulled the program) with the terminally ill. By this time we sort of knew what they had, but we were struggling to give them things to stop or to slow the process of dying all the while knowing that we might buy time, some time, but that was all. In fact I worked, under the terms of the contract, only with guys looking at a few months left. 'He' could be fine, lucid, one moment and having major problems because he wanted- craved- a hamburger. Or the guy who trusted me to figure out why God's Love We Deliver, his only source of food aside from a tiny food pantry, couldn't seem to deliver his only meal of the day. The restaurant manager who agreed to the service was off.

Again, I am not telling anyone what is lite or heavy here. It is still difficult for those of us who lived through the early years to, as one thread brought up, 'justify' or 'understand' why we are here and so, so many others not here, here one day and gone the next or prolonged for days into weeks in hospitals which didn't want them (another aspect of the times). I will agree that when Tim or anyone else sees 'it' going on today, decades after we went after hiv, the reality is staggering: how is it possible? Win

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Winthrop Smith has published three collections of poetry: Ghetto: From The First Five; The Weigh-In: Collected Poems; Skin Check: New York Poems. The last was published in December 2006. He has a work-in-progress underway titled Starting Positions.

I think most of us agree that things have improved in regards to treatment and it is no longer considered terminal. The pessimist agree that although there are more options in treatment, it will screw up your body due to its toxic components. The optimist bellieve that it is a chronic disease and meds save your lives. And then comes those people who actually have been living with meds and are stuck in the middle and have many opinions. Are we better off in 2007 than in 1984? Yes. I certainly can not imagine nor want to think about how people in the 80's and early 90's felt when their doctors told them there is not much we can do or just sitting there waiting to perish. Part of the disease is the agony and the hopelesness. Even if the meds today are going to eventually kill us, it's the hope that if we hang in there a little longer something better may come along. It's that hope that makes us live and fight back. Sometime hope in itself is part of our medicine. For those who passed away in the era where nothing was available they didn't even have that opportunity to take something while something else better came along. Unfortunately it seems like this virus is almost invincible to kill.

I agree with Moffie...the attitude and complacency as contribued this "HIV lite" mentality...I also know for a fact that being HIV positive today is better than it was 10 or 20 years ago...the meds give us added years...but at what cost?

We are still realizing the effects of longterm exposure to the meds...some are much more harmful than others...in all honesty, this virus is still a terminal virus...it causes AIDS which will eventually cause death...that is a fact. What is also a fact, is that education and the general population who are HIV negative still lacks knowledge which leads to stigma and predjudice!

Studies are showing that, even though our viral loads can be undetectable in our blood...the little bastard is still causing havoc within our lymph and nervous systems! Although our viral loads in our blood can be controlled...it is still running wild in our guts...why?? Cause there is still a lot of work to be done with research and finding a cure!

Maybe I am becoming more bittered as I deal with this...or maybe I am just watching reality a little closer...but I can not stand with my head in the sand and pretend that people, in this country are still dying from this God Damned thing!

My meds, cause me to be tired, give me really horrible bouts of diarreah and cause me not to sleep through the night...I take them because...I am expected to...do I want to? No...but I do it!

It all just makes the whole fucking "HIV lite" thing seem so damn trivial and ridiculous. There are simply those of us who are surviving and those of us who, well, are not. Yeah, there are those who suffer on a day-to-day level more -- or should I simply say "differently" -- than others... but while we're all living with a virus that can rob ANY of us -- medical advances be damned -- of life, well, I'll leave the "HIV lite" battle to those who really think something even remotely beneficial will come out it it.

Tim

My sentiments exactly, Tim. Condolences on the loss of your friend.

Alan

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"Remember my sentimental friend that a heart is not judged by how much you love, but by how much you are loved by others." - The Wizard of Oz

What's the point of constantly debating this topic? It never leads to anything.

I respectfully must disagree. If this debate awakens just one more person to the need to become an activist in the fight against HIV, then I hope we are constantly debating this topic. I think people in countries with health care just don't understand the dire circumstances in which many in the United States live. The sword of HIV Damocles that many (myself included) find hanging over our heads. Imagine the situation you yourself recently went through and imagine it as if you were sitting on a waiting list with no access to healthcare. I hope the debate continues.

I want to be present at the burial or cremation of that vile phrase. It was, and is, insolent and insulting.

I was furious when I read the November thread. And thought it best not to respond in anger. I have just re-read that entire thread (link above) and am seething again. The original poster is apparently taking notes on "the current level of banality." The only real banality -- in the sense of feeble thoughtlessness -- I see in that thread is in the original post, the original posters response #61; and in this thread, the tone of Gruff Doughty Warrior in today's post.

Well-intentioned, certainly. But insolent and insulting nonetheless.

Jay

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Her finely-touched spirit had still its fine issues, though they were not widely visible. Her full nature, like that river of which Cyrus broke the strength, spent itself in channels which had no great name on the earth. But the effect of her being on those around her was incalculably diffusive: for the growing good of the world is partly dependent on unhistoric acts; and that things are not so ill with you and me as they might have been, is half owing to the number who lived faithfully a hidden life, and rest in unvisited tombs.

I agree. It is insulting, both in the usage of the term and in how it's applied to whole heaps of people, (lets not even get on the newbies vs oldies bit), without so much as an attempt to understand how ALL of us struggle to deal with HIV, not just those living in the US; not just those relying on ADAP; and not just those living on disability.

I don't believe this discussion creates new activists. It just reinforces a them versus us mentality.

I echo Skeebo's thoughts and also Cliff's inference that this debate seems to result in the same circular stalemate.

I've already said how blatantly condescending the term "HIV Lite" is so not much more to say on that. All I can do is speak up when people try to malign others with it in a haughty condescending way.

I've also resigned myself to the fact that there is a very small minority of people here who try to contort one's hope, positive attitude and highly functional living into something that should frowned upon, something so foreign to their ingrained understanding that they are more interested in being an all knowing fortune teller than listen to anyone else's, or respect anyone else', experience.

People are living and managing with HIV. I'm sorry if the word "management" gives some people the cooties, but it is for some and my hope is it will become so for more because I want people to thrive and live. I'm not gonna let anyone else try to define me or other's around me who share my belief. Free country - believe what you want - but don't talk down to my reality because it's not how you think I should be characterizing my life with HIV.

People manage many other diseases too. People also die from the same diseases. Diabetes was a death sentence before insulin. Today people still die from it (in fact it was one of the top killers in NYC according to the latest health statistics) and suffer from blindness and neuorpathy and infections too. Other manage with it and consider it a manageable disease.

My belief is that HIV has come to a similar point, based on my experience living with it and in the community and seeing for myself.

It's not a disease in 2006 that can be defined by one narrow trajectory as some feel the need to perpetuate. If that makes me unpopular, then so be it. But I know my view is not uncommon in the greater HIV community. Living with HIV is very diverse and no one should be glib about it, but it also doesn't man you should be miserable or deny your truth or hope or happiness to increase someone lese's comfort level.

Anyway, just my two cents which is sounding more like a broken record that will probably make no difference to some but as you know I have strong opinions and needed to share my view (especially since my comment resulted in this thread in the first place).

Peace all!!!Mikey

« Last Edit: January 29, 2007, 05:07:27 PM by StrongGuy »

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"Get your medical advice from Doctors or medical professionals who you trust and know your history."

"Beware of the fortune teller doom and gloomers who seek to bring you down and are only looking for company, purpose and validation - not your best physical/mental interests."

"You know you all are saying that this is incurable. When the real thing you should be saying is it's not curable at the present time' because as we know, the great strides we've made in medicine." - Elizabeth Edwards

The unfortunate truth, is that this virus mutates to it's own chemical music as it were, in each of us.It can devastate a person's whole being, and taint familial love. It can rear it's ugly head with disdain to our human efforts, despite 'Modern Medicine'.My own father died of Septic Shock with multiple organ failure, quickly.My only wish was that he did not suffer discomfort from these dire things, and that his passing be swift, and comfortable.One of my comforts in life now, is knowing that he was surrounded by love in his final moments. I could only wish for the same.

No, I am not HIV Lite. I'm in it deep, dark, dirty, and scary.

It makes no matter what you call it, we still all come together here to share with each other.I respect, and admire, my wonderful feelings about the friends I have found here.

By the simple sharing of our individual selves, we have accomplished some huge acts of faith.

I felt so loved, and accepted by the folks present at the AMG. We hugged each other in overwhelming joy to touch, and be met with affirmation of our shared existence.

I regret sincerely that there is an anomoly occurring that would devise us in any way.

I cannot say more.

« Last Edit: January 29, 2007, 05:23:57 PM by Lisa »

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No Fear No Shame No StigmaHappiness is not getting what you want, but wanting what you have.

There is no such thing as 'HIV LITE".No, I am not HIV Lite. I'm in it deep, dark, dirty, and scary." quote Lisa...............................Earlier I said lets put HIV Lite to rest...this is what I had in mind.

I agree that everyones' experience is different with this disease. Their is no right or wrong way to explain it. One might die from complications in a few years from bad reactions to the meds..while the two people next to that person might not have any probs on meds and live a solid 30-40 years or who knows..longer. So for someone it might be "managable" to them while not for another person. Every one has a right to define their own illness with how it relates to them personally. Who am I to tell someone their disease is or isn't managable for them? Don't judge..keep sharing.

Iíve watched this debate for months. Iím not sure if all my thoughts are coherent, but here goes.

Perhaps because I havenít had HIV as long as the many that speak out about the dangers of compliancy, but much longer than many of the new people on this board I have the opportunity to see both sides. As with the long term survivors, Iíve had friends die from AIDS. My husband came close to death. Iíve seen the nasty side of this disease. Iíve seen treatment failure and the subsequent shutting down of a body too worn to fight any longer.

I have learned a fact of death. People die from AIDS. People die from complications of AIDS. The quality of life can be slowly stripped away. The hell of a body ravaged by this little virus can cause death can be a kindness. This is as true today as it was 25 years ago.

I was told I had HIV just a few days before the first PI hit the streets. So I came into this at a time when there was much excitement over how we would now beat HIV at its own game. Much like we hear now about the newer therapies.

The stories you could read at the time were amazing. There was one story that stuck in my mind. The newspaper had reported that one man that was in the hospital with his friends and family waiting for the inevitable, was put on this new miracle drug. Within a few weeks, he was going homeÖ.better than that. He was going fishing every morning once again. HIV was conquered. We thought.

What we didnít know at the time was exactly what the toll would be on our bodies. We didnít know that these medications would lead to heart problems, liver problems, neurological problems. We didnít know how easily the virus could mutate and adapt in order to survive. I donít think many realized at the time what the enormous cost all this would incur.

We were disappointed. Not the first time. Not the last.

Point number 1:

I think itís an important message that long term survivors are trying to make. Donít take this virus for granted and donít put all your trust in the current medications. FIGHT FOR MORE RESEARCH AND BETTER MEDICATIONS. If we donít fight. Nothing will be done.

Point number 2:

I saw someplace, maybe on here a slogan. ďIf one of us has AIDS, we all have AIDSĒ Letís change that a bit. If one of us canít get the health care and medications to live, we all lose. I saw a headline not long ago. 3 people in South Carolina died while waiting for ADAP. That could be any of us. This is unacceptable. Those of us that can afford health care and medications are extremely lucky, but in the back of your mindsÖ.rememberÖ.there but for the Grace of God go I. Not one person should have to do without. No one should have to run a slightly illegal drug exchange. If your voice and mine are not raised in anger over the state of health care we have failed. Not only ourselves, but our fellow man. FIGHT FOR EQUAL ACCESS TO HEALTH CARE. Itís up to us that can fight, to fight. One day the bottom may fall out of your life and you will desperately need the access yourself. You just donít know.

I donít think the long term survivors are in the business of gloom and doom, just to be morose. They speak a truth that is as important today as it was in the late 80ís or early 90ís. We canít let our guard down. The fight goes on.

The advances that have been made are a wonder. The quality of life has been raised. Yes, I also enjoy pretty good health, but after 10 years, I also see the wearing on the edges. Even with medications, I canít escape the OIís that could care less about my DC4 count. Just having HIV puts us all at risk for Lymphoma, Cervial Cancer, and a few other OIís and any CD4 count or viral load. Medication wonít stop these.

Thatís not to say that the what has been accomplished in the way of medication should be disregared. We are better off. Especially those that are just starting this journey.

BUT, HIV isnít a chronic disease. Itís a terminal illness and until there is a cure, it is what it is. Never underestimate the enemy and never for one moment give it any quarter. It is not to be trusted.

The message: I guess what Iím trying to say is yes, I manage my HIV pretty well these days. Iím healthy, happy and look forward to the future. But I also know that this can change in the blink of an eye. Iíve always liked living on the edge, but sometimes I find the edge is closer than Iím comfortable with. Hopefully when many of the people that donít understand the long term survivors positions reach as many years, they will not had to have dealt with many issues that still plague us today.

I guess thatís where I am. I enjoy today, but I also donít think it hurts to plan for tomorrow.

Things are better now than they were. Thatís great. But itís not enough. The fight continues. Things can and should be better. Thatís up to all of us.

Eloquently stated, Elizabeth. While there is room for debate on the "chronic disease" (in the industrialized West, that is) or "terminal illness" issue -- I have heard and read doctors and scientists, as well as people living with HIV and AIDS, argue with passionate conviction on both sides of the question -- who would argue with either of your two main points?

Which could also be summarized as saying: Don't be complacent, and The fight isn't over yet.

Of course.

What caused a lot of resentment -- a justified resentment, in my opinion -- about the phrase "HIV Lite" is the breathtaking dismissiveness of the phrase, applied with a broad stroke to whole categories of people. That is wrong, and it is insulting, and it isn't even very smart.

As your reasonably-worded post makes clear, there's not much room for argument on the central points. To repeat: Don't be complacent, and The fight isn't over yet. What I cannot abide is knocking down a straw-man opponent -- someone or some millions who believe that the fight IS over and ARE complacent. And making up an egregious phrase to "combat" or name or shame this straw man opposition. That's what is unacceptable.

But as Tim Horn's eloquent and sad post also made clear, there are times when the debate (if it can be honored with that label) over phrases like "HIV Lite" seem completely irrelevant.

Jay

Moving on... Again.

I want to get sozzled at this wake.

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Her finely-touched spirit had still its fine issues, though they were not widely visible. Her full nature, like that river of which Cyrus broke the strength, spent itself in channels which had no great name on the earth. But the effect of her being on those around her was incalculably diffusive: for the growing good of the world is partly dependent on unhistoric acts; and that things are not so ill with you and me as they might have been, is half owing to the number who lived faithfully a hidden life, and rest in unvisited tombs.

The weave of this thread is truly inspiring. I am moved by the naked, pointed reflection. I carry the weight of HIV in my body and I am proud to share the burden with all of you. These challenging words do honor to those who came before and those who have passed on. You all add little tributaries to the season of change, that tomorrow is a little better with regards to this dreadful virus.

BUT, HIV isnít a chronic disease. Itís a terminal illness and until there is a cure, it is what it is.

While a lot of your points are compelling, I think telling people how they are to define their illness (between those two terms) is unproductive. You could view life as terminal. Or death as chronic. We could get into a whole philosphical debate and get us back to nowhere 'cause I don't believe there is any one term we are required to use as if it is more "correct." I thin we're btter served if we leave it up to the individual because there is no black and white answer to this no matter what one opinion says.

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I donít think the long term survivors are in the business of gloom and doom, just to be morose. They speak a truth that is as important today as it was in the late 80ís or early 90ís

I wish I was convinced that some of the "gloom and doom" stems from a positive message or "truth" to be helpful, but I'm really not convinced after reading a lot of the condescension bestowed upon newer diagnosed people.

I understand the history. We get it. We respect it. We undertand it. But trying to tell us someone else's history will be my future is fortune telling crap. High-browed hubris and preachiness as if we are less because we may not be as battle scarred sums up the origin of this whole "HIV Lite" crap pretty well.

If we want better drugs and healthcare, get the Republicans and conservativve lunatics out of office (just my mild suggestion:)

Peace all!Mikey!!!!!

« Last Edit: January 29, 2007, 07:37:45 PM by StrongGuy »

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"Get your medical advice from Doctors or medical professionals who you trust and know your history."

"Beware of the fortune teller doom and gloomers who seek to bring you down and are only looking for company, purpose and validation - not your best physical/mental interests."

"You know you all are saying that this is incurable. When the real thing you should be saying is it's not curable at the present time' because as we know, the great strides we've made in medicine." - Elizabeth Edwards

I completely and totally agree with lydgate. While many terms are created with the best of intentions... I personally find "HIV Lite" to be condescending and divisive in the extreme. I sort of shudder everytime I read it... mostly because of the huge amounts of emotional baggage the term cannot help but bring with it.

From now on, I demand to be called "HIV Full Flavored." Like my cigarettes.

Elizabeth feel free to send me a PM if you are genuinely interested in my political activism and I'd be happy to share if your interest is sincere.

I guess I'm an "HIV Ultra Lite."

Mikey

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"Get your medical advice from Doctors or medical professionals who you trust and know your history."

"Beware of the fortune teller doom and gloomers who seek to bring you down and are only looking for company, purpose and validation - not your best physical/mental interests."

"You know you all are saying that this is incurable. When the real thing you should be saying is it's not curable at the present time' because as we know, the great strides we've made in medicine." - Elizabeth Edwards

If you do not like the "power" that a phrase has attained, then stop using the phrase. This whole argument is so muddled that you are comparing apples and oranges. Tim's (Moffie) original post using the term "HIV lite" was in direct reference to some changes that have occurred on these forums. It was his opinion and I believe that much of it is based in fact, even if it came across as somewhat condescending, but that is part of the whole problem because without the "drama" it seems that few want to pay attention.

Nobody is asking nor telling anyone how to live or trying to minimize their challenges, but sometimes people need to be reminded of how good they have it and be reminded that there are millions who are literally dying for the HIV care that they receive. I get sick of hearing myself and others bitch about our current HIV treatment funding levels, however if we stop talking about it, then nothing gets done. We saw the damage that was done in the early years, when thousands of men were just paralyzed by GRID or HIV, either by having it, knowing someone who did or fearing when they would get it. Yes they had enough to worry about, but it allowed Reagan to not even mention the word AIDS until the 7th year of his term.

The Bush administration has flat funded Ryan White for the past 5 years, leading to wait-lists for treatment because there is not enough funding to meet our current needs. Infection rates are up while funding remains flat (which is actually a decrease when you add in the newly infected.) Why bother with HIV testing if you cannot provide treatment with a positive test? Who cares what we call any of this and why are so many ready to fight, over mere words, while missing the message that these discussion should generate.

My whole point here is stop bickering and worry about the important stuff. The facts of HIV have always been clear and if you are not careful it will kill you. However for some of us, there are never any options and HIV will simply kill them. There are also those who for whatever reason have no voice in the HIV community and so someone needs to step up and make some waves. In a way, HIV today is no different at all from what it was in the early 80s.

I believe in keeping the HIV community firmly planted in the past, as they forge a new future. The challenges regarding HIV have not changed in 25 years, even as advances in science, etc., has brought us light years from the 80's, but people still die from HIV every minute of every day. Worst of all is while our needs are better known, the funding to meet those needs, continues to shrink each year, as infection rates continue to rise. We send billions from our country to fight AIDS abroad, yet our Congress will not add a few hundred million to the Ryan White Funding that would remove waiting lists for HIV services in this country.

And the biggest thing that has not changed is that if we don't advocate for ourselves, who do you think will??? So part of the issue is too many want to take issue with the term instead of the reason behind it.

Others made very salient points regarding the various challenges and perceptions regarding HIV and my only hope is that we can continue dialog, without getting mired down in the actual words.

I think we all agree on some basic points and if you dial down your ego, I expect you can see many similarities between us all. It's just that some of us have more history than others and we know what can happen to us if we do not remain vigilant. I don't bitch because I want to, I do it because I am afraid of what will happen if I stop. The program you don't care about today, is the one you may need tomorrow and in the world of Washington it is much harder to regain that which has been lost, than to allow its' loss in the first place.

You think getting Ryan White reauthorized every 5 years is a bitch, imagine how hard it would be to even get such a program started today with our soaring deficits. So drop the worry about the terms and let's return to discussing how we can truly affect change because this is an area in which your actions can directly save the lives of others, because in the end, THAT is what this is all about.

But trying to tell us someone else's history will be my future is fortune telling crap.

Hey there Mikey. Would you mind providing links to where that has been done? Yknow, just so I can see why you choose to beat the same dead horse over and over? The whole focus is funding/legislation, not really so much biology.

Alex it's not a dead horse and plenty of people have agreed with me both in public and private and - seeing as how I have a PM from you still in my inbox agreeing with me the last time this issue came up, I find your current remark in reference to me pretty funny.

If you want specifics send me a PM and I'll tell you who to look up to see exactly what I am talking about. Not going to call out people on here. I'll give you a hint - look up the person you wrote to me about and that's the first place to start.

People sometimes amaze me...

Mikey

And...

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If you do not like the "power" that a phrase has attained, then stop using the phrase

The power behind the phrase comes from people who use it and weaponize it. If you think merely repeating the phrase (and making a light-hearted reference as I did) is the solution (in a thread prompted by the egregious use of the phrase) then you really need a clue.

« Last Edit: January 29, 2007, 08:18:19 PM by StrongGuy »

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"Get your medical advice from Doctors or medical professionals who you trust and know your history."

"Beware of the fortune teller doom and gloomers who seek to bring you down and are only looking for company, purpose and validation - not your best physical/mental interests."

"You know you all are saying that this is incurable. When the real thing you should be saying is it's not curable at the present time' because as we know, the great strides we've made in medicine." - Elizabeth Edwards